CYSTIC FIBROSIS REGISTRY OF IRELAND

The Cystic Fibrosis Registry of Ireland (CFRI) is the national patient registry dedicated to people living with cystic fibrosis across the island. By securely collecting and curating clinical and demographic information, the Registry provides a vital evidence base for clinicians, researchers and policy-makers, enabling better understanding of disease patterns, treatment outcomes and long-term trends.

CFRI's core services include managing the data-collection process for participants, overseeing the use of this information for research, and publishing annual reports and scientific papers in line with a clear publication policy. The organisation also supports the Irish Cystic Fibrosis community through events such as the Irish National Cystic Fibrosis Conference, where clinicians and researchers can present posters and real-world case studies.

Operating from Dublin and serving patients, families and healthcare professionals throughout Ireland, CFRI combines rigorous data stewardship with a collaborative spirit, helping to drive improvements in care and to advance cystic fibrosis research nationally.